Woman, 24, who hasn’t eaten for 10 years shares first symptoms of illness as she goes into palliative care aged 22
For most, an evening around the dinner table is a perfect way to wind down with friends and family.
But for 24-year-old Annie Holland, just the smell of food makes her feel sick.
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For the last 10 years, she has been unable to eat and has relied on IV-administered nutrition to stay alive. Her condition is terminal.
“When I was a teen, I started struggling with dizziness, fainting spells, and digestive issues,” Annie, from Adelaide, Australia, says.
“Doctors couldn’t figure out what was wrong until a urine and blood test confirmed I had autoimmune autonomic ganglionopathy (AAG).”
AAG is a lifelong disease that causes her immune system to attack healthy nerve cells.
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Over the years, Annie’s condition has worsened, requiring several brutal surgeries to remove over ten feet of her bowel.
This has left her with intestinal failure, a condition where the intestines can’t absorb enough nutrients and fluids to sustain the body.
“It’s hard to explain to people what it feels like to never be able to eat,” Annie says.
“Food is such a normal part of everyday life for most, but for me, it’s something I can’t even consider.
“There’s a lot of isolation that comes with it.
“I can’t join in on social meals, and the smell of food cooking can make me feel incredibly sick.
“It’s hard to be around something that’s a normal part of life for everyone else but a danger to me.”
Annie’s illness began when she was 12. By 15 it had got “worse” and she was going back and forth to doctors.
“By 18, I was diagnosed,” she says. “And by 22, I became terminal.”
She isolated herself, going months without visitors, in hospitals and pain.
“I never thought this would be it,” she says
“I never saw my life ending soon. The fact I can’t plan or even think about the future breaks my soul.”
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‘I’ve become my own nurse’
Annie has endured months of excruciating symptoms, surgeries, and medications, including high-dose steroids that caused her to gain over 20 kilograms in a week.
“The pain, the suffering, the loneliness – no one can understand until they’ve been there.
“Life is so bloody short, and if there’s one thing I want everyone to do for me, it’s to live.
“Make the most of every day, because the fact you woke up today is one of the most amazing gifts you can have.”
Annie’s only lifeline is total parenteral nutrition (TPN), where essential nutrients are delivered directly into her bloodstream via a Hickman line.
“I’ve become my own nurse at home,” she explains. “I had to learn how to set up my TPN in a sterile way.
What is autoimmune autonomic ganglionopathy?
Autoimmune Autonomic Ganglionopathy (AAG) is a rare condition where the immune system wrongly attacks the autonomic nervous system, which controls automatic functions like heart rate, blood pressure, and digestion.
Causes
The exact cause of AAG isn’t fully understood.
It’s sometimes linked to other autoimmune diseases, such as coeliac disease, lupus, rheumatoid arthritis, and Sjögren’s syndrome.
In some cases, AAG is associated with certain cancers, like small-cell lung carcinoma and thymoma.
Symptoms
Symptoms can vary but often include:
- Dizziness or fainting when standing up
- Digestive problems like constipation, bloating, or difficulty swallowing
- Abnormal sweating, either too much or too little
- Fast heart rate or other heart-related issues
Treatment
Treatment aims to reduce the immune system’s attack on the autonomic nervous system and manage symptoms.
Options may include:
- Immunosuppressive Medications: Drugs that suppress the immune response
- Plasma Exchange: A procedure to remove harmful antibodies from the blood
- Intravenous Immunoglobulin (IVIG): Infusions of healthy antibodies to help regulate the immune system
Given its complexity, AAG requires care from specialists familiar with the condition.
If you or someone you know is experiencing symptoms suggestive of AAG, it’s important to consult a healthcare provider for proper evaluation and management.
Source: The Cleveland Clinic
‘If my heart stops, I wouldn’t be resuscitated’
Living on TPN has its risks, including multiple bouts of life-threatening sepsis – when the body overreacts to an infection.
“If even a tiny bit of bacteria gets into my line, it can travel straight to my heart,” she says.
“If I lose this last line, I will enter end-of-life care and starve to death,” she adds.
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“It’s a terrifying thought.
“I’m undergoing the removal of all my teeth to hopefully prevent further sepsis.”
The treatment is expensive, costing her between $2,000 and $3,000 AUD (£984 – £1,476) a week, not including additional supplies.
The financial strain is coupled with the emotional toll of living with a terminal diagnosis.
“In 2022, my illness became terminal. I was told if my heart stopped, I wouldn’t be resuscitated.
“Hearing that was heartbreaking, but I’ve focused on making the most of the time I have left.”
Annie is grateful for the care she’s received from the adult home parenteral nutrition (HPN) team at Flinders Medical Centre, led by Dr Andrew Holt.
“He’s dedicated his career to me and other TPN patients, fighting for awareness and ensuring the unit stays operational,” she says.
“I wouldn’t be here today if it weren’t for Dr Holt and his amazing nurses.”
‘I’m not giving up’
Despite her own struggles, Annie is determined to help others living with TPN.
She launched a GoFundMe campaign to support the TPN unit.
“I want to help keep the unit running and provide better facilities,” she explains.
“Right now, it’s in a small, crowded office with limited space.
“The funds will go towards hiring more nurses, training staff, supporting families, and buying equipment like a Fibroscanner to monitor liver health.”
“My illness may be terminal, but I want my legacy to be about helping others,” Annie says.
“I’m not giving up. There’s so much more I want to do to help, even if my time is limited.”